Dementia Education Research Articles

Dementia needs assessment in Latine communities: strengths, challenges and policy opportunities in Wisconsin, USA

AbstractBackgroundLatinx populations are 1.5 times more likely to develop ADRD than non‐Latinx whites. Despite their heightened risk, they are more likely to be undiagnosed, under‐diagnosed and misdiagnosed. This is exacerbated by the lack of culturally appropriate information addressing ADRD to combat culturally specific stigma and misconceptions, as well as a dearth of culturally suitable resources. Infrastructure development that engages the community and community organizations can assist in overcoming these challenges by addressing community needs, capitalizing on existing resources, fostering sustainability, and promoting health equity.MethodUsing a modified version of the instruments included in the ACT on Alzheimer’s® Dementia Friendly Communities Toolkit, we evaluated the ADRD related needs and other social needs (e.g. transportation) that Latine communities experience in Madison, Wisconsin (USA). The instrument was distributed via email to community organizations and individuals serving Latine individuals in the area. Additionally, a community advisory group contributed to the identification of existing assets/priorities and strategic planning.ResultThe strengths identified for the community were: a sense of community that leads to individuals caring for one another and wanting to provide for one another’s needs, and the availability of a variety of community organizations and individuals who play a role in serving people living with dementia and their care partners. The absence of bilingual/bicultural resources to serve individuals was cited as the most significant challenge, followed by the lack of information regarding dementia, and the paucity of care options for those who are not eligible for Medicare or Social Security benefits. Table 1 reflects the most important services needed in the community. Reimbursement/Service fees (e.g., organizations use Medicare/Medicaid funding and do not have additional revenue sources to serve individuals without insurance), educational requirements for employees without a comparable requirement on language proficiency, and limited funding for multi‐language services were identified as pertinent policies.ConclusionCommunity members viewed dementia education and awareness of care services as crucial. Collaboration with current organizations to provide additional resources that enable them to implement culturally and linguistically appropriate processes for all is key to ensure the sustainability of future endeavors.

A culturally and linguistically tailored Community-Engaged Dementia Education Program (CEDEP) for the Houston Vietnamese American community.

Data from the Vietnamese Aging and Care Survey (VACS) showed the high prevalence of disability, depressive symptoms, and cognitive impairment in older Vietnamese immigrants and refugees. We proposed a Community-Engaged Dementia Education Program to examine the Houston Vietnamese American community's literacy on dementia and develop a one-pager educational material. This is a cross-sectional, qualitative study (interviews and focus groups) using the Cultural Exchange Model as a conceptual framework. We interviewed fourteen Vietnamese key informants and assessed the community's knowledge of dementia based on Edwards' 9-stage Community Readiness Model. The community's low literacy on dementia (Stages 2-3: Denial/resistance to vague awareness) was revealed. Approaches to introducing dementia conversations to the community and what to include in the one-pager were discussed. Based on the key informants' insight, we developed a dementia one-pager tailored to the community by using lay language with a representative image of the target population, indicating warning signs of dementia, and encouraging them to see their doctors for cognitive check-ups. The plan for the next steps includes utilizing the local ethnic media, collaborating with the existing pillars of the Cultural Exchange model, leveraging the university students' learning opportunities, and disseminating the culturally and linguistically tailored one-pager.

Factors associated with disagreement between clinician app-based ultra-brief Confusion Assessment Method and reference standard delirium assessments.

Recently, the Ultra-Brief Confusion Assessment Method (UB-CAM), designed to help physicians and nurses to recognize delirium, showed high, but imperfect, accuracy compared with Research Reference Standard Delirium Assessments (RRSDAs). The aim of this study is to identify factors associated with disagreement between clinicians' app-based UB-CAM assessments and RRSDAs. This is a secondary analysis of a prospective diagnostic test study. The study was conducted at two hospitals and included 527 inpatients (≥70 years old) and 289 clinicians (53 physicians, 236 nurses). Trained research associates performed RRSDAs and determined delirium presence using the CAM. Clinicians administered the UB-CAM using an iPad app. Disagreement factors considered were clinician, patient, and delirium characteristics. We report odds ratios and 95% confidence intervals. One thousand seven hundred and ninety-five clinician UB-CAM assessments paired with RRSDAs were administered. The prevalence of delirium was 17%. The rate of disagreement between clinician UB-CAM assessments and RRSDAs was 12%. Significant factors associated with disagreement between clinician UB-CAM assessments and RRSDAs (OR [95% CI]) included: presence of dementia (2.7 [1.8-4.1]), patient education high school or less (1.9 [1.3-2.9]), psychomotor retardation (2.5 [1.4-4.2]), and the presence of mild delirium or subsyndromal delirium (5.5 [3.5-8.7]). Significant risk factors for false negatives were patient age less than 80 (2.2 [1.1-4.3]) and mild delirium (3.5 [1.6-7.4]). Significant risk factors for false positives were presence of dementia (4.0 [2.3-7.0]), subsyndromal delirium (5.1 [2.9-9.1]), and patient education high school or less (2.0 [1.2-3.6]). Clinician characteristics were not significantly associated with disagreement. The strongest factors associated with disagreement between clinician UB-CAM screens and RRSDAs were the presence of dementia and subsyndromal delirium as risk factors for false positives, and mild delirium and younger age as a risk factor for false negatives. These disagreement factors contrast with previous studies of risk factors for incorrect clinician delirium screening, and better align screening results with patient outcomes.

Use of the Spanish English Neuropsychological Assessment Scale in older adult Latines and those at risk for autosomal dominant Alzheimer’s disease

ABSTRACT Objective The Spanish English Neuropsychological Assessment Scale (SENAS) is a cognitive battery with English and Spanish versions for use with persons for whom either language is predominant. Few studies have examined its utility outside the normative sample. The current study examined SENAS performance in samples of older adult Latines and Latines with or at risk for autosomal dominant Alzheimer’s disease (ADAD) mutations. Method The SENAS was administered to 202 older adults from the Los Angeles Latino Eye Study (LALES) and 29 adults with (carriers) or without (non-carriers) mutations causing ADAD. We examined associations between SENAS, age, education, and language (LALES) and between SENAS, estimated years from familial age of dementia diagnosis, education, language, and acculturation (ADAD). Partial correlations were used to examine differences in correlational strength between estimated years from familial age of dementia diagnosis and SENAS scores among ADAD carriers compared to chronological age and SENAS in the LALES sample. Exploratory t-tests were performed to examine SENAS performance differences between ADAD carriers and non-carriers. Results In an older adult sample (LALES), increased age correlated with worse verbal delayed recall; English fluency and higher education correlated with better naming and visuospatial subtest performance. Among ADAD carriers, verbal and nonverbal delayed recall and object naming subtest performance worsened as they approached their familial age of dementia diagnosis. English fluency and higher U.S.-acculturation were related to better SENAS performance among carriers and non-carriers. Tests of verbal delayed recall and object naming best distinguished ADAD carriers from their familial non-carrier counterparts. Conclusions Verbal delayed recall and object naming measures appear to be most sensitive to age-related changes in older adult samples and mutation-related changes in distinguishing ADAD carriers from non-carriers. Future research should examine the sensitivity of SENAS in other samples, such as larger samples of symptomatic ADAD carriers and other AD subtypes.

'There's something they can do': Educating aged care staff about the trajectory of dementia, palliative care and the Namaste Care™ program: A mixed methods study.

To evaluate outcomes of education about the dementia illness trajectory and Namaste Care™ program on aged care staff's knowledge, attitudes, self-perceived skills and competence. A convergent mixed methods research design was adopted to compare the results of quantitative and qualitative data following an education intervention. Nurses and aged care staff (n = 35) undertook 2 × 2 h training sessions over 3 days. Data were collected pre- and post-intervention using three validated surveys. Qualitative data were collected through interviews and a focus group. Thematic analysis was used to generate themes. Quantitative and qualitative data were integrated and compared during interpretation and discussion of the findings. Significant improvements in knowledge, attitudes and skills survey scores from already published data were confirmed by the qualitative findings in this study. Three key themes were derived from the data, comprising dementia-related education and knowledge changes, recognising the benefits of the Namaste Care™ program, and the importance of changing practice. Dementia education using the Namaste Care™ program enabled staff to identify gaps in knowledge and skills within their own practice. Staff perceived that the Namaste Care™ program can be a driver for practice change including palliative care to improve quality of life for people living in the advanced stages of dementia.

Beyond knowledge and confidence: a mixed methods evaluation of a Project ECHO course on dementia for primary care

ABSTRACT Primary care clinicians have an important role in the management of dementia and have expressed interest in continuing education. The authors describe a model they used for providing dementia education in primary care, Project ECHO (Extension for Community Healthcare Outcomes), and an overview of its major features. A partnership including academic institutions and a national healthcare association is then outlined, including the unique features of the ECHO model developed through this partnership. A mixed-methods methodology was used for programmatic evaluation. This use of mixed methods adds vital new knowledge and learner perspectives that are key to planning subsequent ECHO courses related to dementia and primary care. The discussion includes an exploration of the significance of these findings for understanding the motivations of primary care providers for participation in the educational program, as well as the limitations of the current study. A final section explores the next steps in the continued development of the model and its implications for geriatrics education in dementia care, especially the supportive role that ECHO courses can play in meeting the challenges of dementia care.

Teaching children about dementia: blending old and new technologies to capture evidence of student learning – an auto-ethnographic reflection

ABSTRACT This study examines ways that both old and new technologies were employed in an educational project teaching children about dementia. Participants were taught about the impact of dementia on the health of individuals and on the communities where they live. The Dementia knowledge, Art, Research and Education (DARE) project initiated in Australia, used a multimodal approach, blending digital technologies with traditional creative art materials. This paper explores a second iteration of the project in Scotland, where data obtained through observations, field notes, journaling, and analysis of artwork are presented through auto-ethnography. Conclusions discuss the effectiveness of blending old and new technologies and the pedagogical impact on the researcher, teacher, and student participants involved.

Lost in translation: how can education about dementia be effectively integrated into medical school contexts? A realist synthesis

ObjectivesThe prevalence of dementia in both community and hospital settings requires a clinical workforce that is skilled in diagnosis and management of the condition to competently care for patients. Though...

Physiotherapy students are underprepared to work with people living with dementia: a qualitative study

ObjectivesTo 1) explore physiotherapy students’ experience in caring for people with dementia; 2) develop a rich understanding of their perceived preparedness to work with people with dementia upon graduation; and 3) identify opportunities to improve dementia education from the perspectives of students. DesignA qualitative study comprised of semi-structured interviews via web conferencing software. Thematic analysis was undertaken, with themes/subthemes derived and a qualitative framework generated. SettingThree Victorian Universities in Australia. ParticipantsPhysiotherapy students of entry-to-professional practice education programs (n = 17; mean age 23.7 years, 65% female), having completed at least 15 weeks of clinical placements. ResultsThe overarching theme was that students’ experience of providing care for people with dementia was variable. The three sub-themes were: 1) students experience significant challenges when working with people with dementia, 2) students experience a range of emotions when working with people with dementia, and 3) the quality of dementia learning experiences during entry-to-professional practice training is mostly inadequate. Students described the importance of the supervisor during clinical placements, and suggested incorporating ‘real-life’ scenario training in the classroom to assist them learn to manage the challenging symptoms of dementia. ConclusionPhysiotherapy students believe that entry-to-practice dementia education is insufficient. These findings have important implications for the future planning and delivery of physiotherapy dementia education. Contribution of the Paper•This paper provides evidence that physiotherapy students found their experiences in providing care for people with dementia was variable.•Students highlighted the importance of the clinical placement supervisor in their experiences.•Students suggested incorporating ‘real-life’ scenario training into their education to improve preparedness.

Intervention to improve acute care nurses confidence and knowledge in hospital dementia care

ProblemAcute care nurses are the front line of hospital care for persons with dementia (PwD), yet many have inadequate dementia education and lack the confidence to appropriately manage PwD in the hospital setting. ImplementationTwo acute care units with high rates of PwD in a large tertiary-care hospital were provided an education intervention involving interactive case-based discussion of the challenges of inpatient dementia care. ResultsOut of 190 nurses, 171 completed a one-hour virtual educational session, 142 completed pre/post-session confidence surveys, and 123 completed pre/post-session knowledge tests. There was a statistically significant improvement in knowledge scores from 75.8% pre-session to 88.4% post-session (p < 0.001), and pre/post-session dementia care confidence increased from 3.49 to 4.44 ( + 27.22%; p < 0.001) ConclusionAn interactive virtual education intervention improves acute care nurses’ confidence and knowledge in managing PwD in the acute care setting and may improve hospital outcomes for this population.

Dementia care behind prison walls: A descriptive study understanding nurse’s knowledge and educational needs

Aim/objectiveTo establish correctional nurses’ dementia knowledge base and identify their educational needs related to caring for prisoners with dementia. BackgroundThe aging prison population is growing, posing a heightened risk of dementia among older inmates. This study examined the knowledge and perceived educational needs of nurses caring for prisoners with dementia. DesignA descriptive study which was qualitative in nature was undertaken. MethodsData was collected using an online survey which included Demographics, the Dementia Knowledge Assessment Tool 2 and open-ended questions. Descriptive statistics such as percentages and frequency were used to analyse the quantitative data and a qualitative analysis was undertaken to identify common themes and extract meaningful insight from the open-ended questions. ResultsNurses showed a general understanding of dementia and its environmental impact but lacked knowledge of late-stage changes. Eight main themes relating more broadly to the environmental and staffing challenges faced by nurses are presented. ConclusionAlthough participants appeared to have a reasonable dementia knowledge base the study highlights the need for specific dementia education and support focussed on the correctional setting and collaborative partnerships with dementia experts in the community.

Vietnam's Responses to Dementia - An Assessment of Service Delivery.

This study was conducted to assess Vietnam's dementia service delivery. Using WHO methodology, website searches of key organisations focused on three aspects of Vietnam's healthcare system: (1) Health and social workforce; (2) Services, supports and treatment programs; and (3) Promotion of awareness and understanding. Data were analysed using content analysis. While key members of the healthcare workforce receive some education in dementia competencies during their training, the skill-mix of staff in the current workforce appears inadequate to address the complex needs of people with dementia. Although Vietnam's general healthcare system comprises a good variety of service types, there is a lack of dementia-specific services. Available diagnosis and treatment services are concentrated in the hospital system and are mainly located in metropolitan areas, impacting their accessibility. While both community-based and institutional long-term care is available, institutional care is not universally accessible and home-based care is mainly provided by family carers who don't have access to dementia care training. There is no active dementia prevention or public awareness campaign. To improve the ability of Vietnam's service delivery to meet the needs of people with dementia and their carers, the skill-mix of the healthcare workforce should be strengthened by ensuring that dementia core competencies are embedded within undergraduate and graduate education programs and making post-qualification dementia care training available. The capacity of existing community-level health and social services should be expanded to ensure that integrated, specialised and comprehensive health and social services are accessible to all people with dementia. Expanding access to institutional long-term care and making dementia education available to family and other informal carers could increase choice and improve quality of care. Finally, Vietnam could look to other countries in the region with regards to the development of a dementia prevention and public awareness campaign.

Embedding Caregiver Support Within Adult Day Services: Outcomes of a Multisite Trial.

Adult day services (ADS) provide quality-of-life benefits to people with dementia, but few provide systematic caregiver support. We report outcomes of a multisite, national trial testing a staff-delivered caregiver program, ADS Plus. Cluster-randomized trial involving 34 ADS: 18 sites provided ADS (controls) and 16 provided ADS and ADS Plus (intervention). Trained staff met with caregivers to provide dementia education, support/validation, referrals/linkages, and strategies for care challenges and self-care over 12 months. Main outcomes included depressive symptoms (Center for Epidemiological Studies Depression Scale [CES-D]) and well-being at 6 and 12 months, and client attendance over 12 months. Of 203 caregivers (Intervention = 102; Control = 101), 5.9% at 3 months, 12.8% at 6 months, and 22.7% at 12 months were lost to follow-up. Caregivers were predominantly female (80.3%), with 76.4% identifying as White/Caucasian, 14.8% Black/African American, and 12.3% Hispanic/Latino. Most (88.2%) had ≥college education and were 65.0 years old (SD = 13.46). For those with 6-month data, 40.4% control and 40.2% ADS Plus caregivers had depressed symptoms (≥16 CES-D) at baseline. By 6 months, 43.6% control versus 34.2% ADS Plus caregivers had ≥16 scores (odds ratio = 0.38, p = .072). By 12 months, after covariate adjustments, ADS Plus caregivers reported reduced total depression scores versus controls (p = .013) and lower depressed affect scores (p = .015). Of 18 sites providing 12-month client attendance data, 9 intervention sites reported 126.05 days attended versus 78.49 days for 9 control sites (p = .079). Compared with ADS alone, by 12 months, ADS Plus improved caregiver mood and increased ADS utilization by 60.6%. Results support ADS staff delivering evidence-based caregiver support to enhance ADS benefits. NCT02927821.

Understanding the experiences of people with dementia and their family carers participating in healthcare student dementia education: A mixed-methods evaluation from the time for dementia programme.

There is increasing awareness of the potential for positive impacts on student learning from involving people with dementia and family carers within undergraduate teaching. However, research on the experience of people with dementia and their family carers is sparse. This study aimed to evaluate the satisfaction and views of families (people with dementia and their family carers) who volunteered in Time for Dementia (TFD); an educational programme where undergraduate healthcare students visit families at home over a 2-year period. Families taking part in TFD completed a satisfaction survey after taking part in the programme (n = 803). Frequencies of satisfaction survey items were summarised and multiple linear regression models for factors associated with total satisfaction scores were produced. Open text responses were analysed using thematic framework analysis as to the most favourable aspects of the programme and areas requiring improvement. Overall satisfaction was high for taking part in TFD, with a perception of contribution, and being of value. There was strong evidence that families enjoyed the experience and would recommend participation to others. Higher numbers of student visits were significantly associated with greater satisfaction. Families identified aspects of the programme that benefited them, with social interaction rating highly. Improvements suggested by the families included increased visit structure and organisational improvements. This study has sought to evaluate at scale the satisfaction of families taking part in a dementia education programme. It is positive that families report high satisfaction in the programme and identify perceived value for themselves as well as students, suggesting reciprocal benefits. This study contributes to the broader understanding of what Experts by Experience value when taking part in educational interventions.

Identifying undergraduate nurses´ learning requirements and teaching strategies in dementia care education: A nominal group technique

AimIdentify priorities and reach a consensus on student nurses´ learning requirements and the best-suited teaching strategies in dementia care. BackgroundDementia has become a global health priority. Nurses are primary service providers for people with dementia, but they may fall short on professional training. Nursing curricula still lacks a clear educational framework for dementia, meaning that nurse educators must make decisions amidst uncertainty. DesignNominal group technique based on the conceptual framework proposed by Van de Ven and Delbecq (1972). MethodsA structured face-to-face meeting convened in November 2021 involved nine participants who were directly involved in dementia care. The steps in the technique were (a) idea generation, (b) round-robin recording, (c) discussion, (d) voting and ranking, (e) discussion on the vote and (f) re-ranking. Participants answered two nominal questions. Consent, anonymity, feedback and iteration were guaranteed throughout the process. ResultsThe nominal group prioritized theoretical understanding of dementia, communication, caregivers´ needs, comprehensive assessment and ethical practice as learning requirements for nursing students. The outstanding teaching strategy discussed included various approaches to experiential learning. ConclusionsThe nominal group technique process explored learning requirement priorities for student nurses within a specific context. Participants discussed experiential learning as the best-suited teaching strategy. Findings could support nurse educators to design and deliver better dementia education.

Empowering general practitioners in dementia care: The ANTISTIGMA education intervention in Europe.

There is a well-documented lack or delay of diagnosis of dementia in all countries, including in Europe. Most general practitioners (GPs) have acquired adequate academic and scientific information about dementia but avoid using it in practice because of stigma. To persuade GPs of their role in dementia detection, an Antistigma education intervention was designed, with teaching objectives focusing on "Why" and "How" to diagnosis and manage dementia, based on ethical and practical content, as opposed to classical training centered on teaching "What", with mainly academic content. During the European Joint Action "ACT ON DEMENTIA", the Antistigma education intervention was implemented in four Universities: Lyon and Limoges (France), Sofia (Bulgaria) and Lublin (Poland). General data, including information about training and experience in dementia, was collected. Specific scales measured Dementia Negative Stereotypes DNS and Dementia Clinical Confidence D-CO before and after training. 134 GPs and 58 residents R completed the training. The participants were mainly women (74%), and the mean age was 42.8±13.2. Before training, participants expressed difficulties in defining GPs role and worries about inflicting Stigma, Risks of diagnosis, Lack of benefit and Communication difficulties. Participants' D-CO was significantly higher for Diagnosis process (64%) than for other clinical situations. After training, total NS was reduced from 34.2% to 29.9% (p<0.001), and stereotypes were improved: GPs' role (40.1% reduced to 35.9%; p<0.001), Stigma (38.7% reduced to 35.5%; p<0.001), Risks of diagnosis (39.0% reduced to 33.3%; p<0.001), Lack of Benefit (29.3% reduced to 24.6%; p<0.001) and Communication difficulties (19.9% reduced to 16.9%; p<0.001). After training, D-CO was significantly increased in all the clinical situations (p<0.001), but stayed highest for Diagnosis Process. There was no significant difference between the universities. Participants who benefited best from the Antistigma education intervention were those without training in Geriatrics and those working in nursing homes (who reduced the most D-NS), as well younger participants and those who managed less than five people living with dementia per week (who increased the most D-CO). The Antistigma program is based on the idea that most often GPs and R have acquired adequate academic and scientific information about dementia but avoid using it in practice because of stigma. These results outline the importance of addressing ethical issues and practical management situations in dementia education, to empower GPs in dementia care.

The effectiveness of educational interventions in the community that aim to improve informal carers knowledge of dementia anatomy, physiology, progression, and impact on behavior: a systematic review.

Dementia education is a vital component of dementia care and management for patients and their informal carers and family. To fully understand dementia, some knowledge of the anatomy and physiology of the brain may be necessary and would help informal carers understand behaviors of dementia to help cope with care provision. This integrative review aims to identify, appraise, and assess whether dementia education resources include information detailing the anatomy of the brain and its relationship with dementia and whether this information improves knowledge (PROSPERO Registration Number: CRD42022320530). Literature published from 2012 until May 4, 2022 was searched in eight databases with six articles meeting the inclusion criteria. Using the Mixed Methods Appraisal Tool (2018) methodological quality varied across studies. There are limited educational interventions which incorporate information on the anatomy and the physiology of the brain. None of the interventions focused solely on providing neurological education; however, all contained at least some content that addressed this, as per inclusion criteria. In most cases, the educational interventions were well-received and delivered, which did not differ, whether they were delivered in person or virtually. The majority of the studies reported an increase in dementia knowledge (measured pre-post or perceived) following the intervention. Educational interventions on brain anatomy and physiology remain limited, and if included, are often not the focus, and as such more rigorous study is required to investigate the effect of educational interventions on dementia knowledge and their role in dementia care.

A Community of Practice to increase education and collaboration in dementia and ageing research and care: The Liverpool Dementia & Ageing Research Forum.

Too often, dementia research is conducted in research silos without thorough integration and the involvement of people with lived experiences, care professionals and the Third Sector. Research can also get lost in academic publications, without reaching those benefiting most from the evidence. The aim of this methods and evaluation paper was to outline the aims, components and evaluation of the public-facing and -engaging Liverpool Dementia & Ageing Research Forum, to provide a blueprint for setting up similar communities of practice. The Forum was set up in 2019 with the aim to (a) connect different stakeholders in dementia and ageing and co-produce research and to (b) inform and educate. This paper provides an account of the Forum model and evaluates the following key elements: (1) engagement; (2) experiences of the Forum and its impact (via an online evaluation survey and three reflections). All Forum members and attendees were asked to complete a brief evaluation survey about their experiences from October to November 2022. Three regular Forum attendees provided a case study about their involvement and its impact. The Forum has reached out to diverse stakeholders and the general public, generating growing interest and engagement since its initiation. Forty-four members and attendees completed the survey. Most attendees completing the evaluation survey have so far engaged in between 5 and 20 activities (47.8%), and 91% felt the aims of the Forum have been met. Engaging in the Forum has produced various benefits for attendees, including increased research capacity and knowledge, as well as improved connectivity with other stakeholders. Eleven percent of respondents, 39% of lived experts, stated they experienced improved access to postdiagnostic care. This is the first reported multistakeholder Community of Practice (CoP) on dementia and ageing. We make key recommendations for setting up and running similar dementia CoP, as they provide a noninterventional format for raising awareness, capacity and access to dementia care. This paper reports on the involvement and engagement of people with dementia, unpaid carers, health and social care providers and Third Sector organisations in a CoP.

Learning to PERSEVERE: A pilot study of peer mentor support and caregiver education in Lewy body dementia

BackgroundLewy Body Disease (LBD) is the second most common neurodegenerative disorder. Despite high family caregiver strain and adverse patient and caregiver outcomes, few interventions exist for LBD family caregivers. Based on a successful peer mentoring pilot study in advanced Parkinson's Disease, we revised the curriculum of this peer-led educational intervention incorporating LBD caregiver input. ObjectiveWe assessed feasibility of a peer mentor-led educational intervention and its impact on LBD family caregivers’ knowledge, dementia attitudes, and mastery. MethodsUsing community-based participatory research, we refined a 16-week peer mentoring intervention and recruited caregivers online through national foundations. Experienced LBD caregiver mentors were trained and matched with newer caregiver mentees with whom they spoke weekly for 16 weeks, supported by the intervention curriculum. We measured intervention fidelity biweekly, program satisfaction, and change in LBD knowledge, dementia attitudes, and caregiving mastery before and after the 16-week intervention. ResultsThirty mentor-mentee pairs completed a median of 15 calls (range: 8–19; 424 total calls; median 45 min each). As satisfaction indicators, participants rated 95.3% of calls as useful, and at week 16, all participants indicated they would recommend the intervention to other caregivers. Mentees' knowledge and dementia attitudes improved by 13% (p < 0.05) and 7% (p < 0.001), respectively. Training improved mentors’ LBD knowledge by 32% (p < 0.0001) and dementia attitudes by 2.5% (p < 0.001). Neither mentor nor mentee mastery changed significantly (p = 0.36, respectively). ConclusionsThis LBD caregiver-designed and -led intervention was feasible, well-received, and effective in improving knowledge and dementia attitudes in both seasoned and newer caregivers. Trial registrationhttps://clinicaltrials.gov/ct2/show/NCT04649164ClinicalTrials.gov Identifier: NCT04649164; December 2, 2020.

In their own words: An exploration of primary children's participation in a dementia education program.

As the population ages the prevalence of dementia increases and children are increasingly experiencing family members and older friends living with dementia. Unfortunately, stigma about living with dementia is common. Increasing understanding about dementia among children has the potential to reduce this stigma. This paper reports on the qualitative findings of Project DARE (dementia knowledge, art, research and education), a school-based, multi-modal, arts program designed to increase understanding about dementia among children aged 8-10 years. A constructivist grounded theory approach was used to understand students' experience of the intervention. Thematic analysis was used to identify key themes emerging from interviews with randomly selected students (n = 40) who had taken part in the program. The data analysis generated three themes related to students' awareness of dementia and experiences of the program: (1) nurturing empathy, (2) memory loss is complex, (3) learning about dementia through the arts to promote resilience. These themes show that the intervention increased students' awareness of dementia, and empathy towards people who are both directly and indirectly affected by dementia. Although dementia education can be viewed as too sensitive for primary aged students, the current study demonstrates that such initiatives are feasible and can be effectively implemented with this age group. SO WHAT?: Changing student's beliefs about dementia can positively impact their relationships with people living with dementia.